Dear MooseMom
Thank you for your question.
While I am sorry to hear that you have FSGS and that after a 20 year battle against declining renal function, you are going to progress to dialysis soon. However, despite that, you are in a lucky minority - and sadly it is still a minority - to have had a good (though in your own words ‘creepy’) and, from the sound of it, a very sound AV fistula already in place, ready to go and well-functioning. This already speaks volumes for a good management strategy by your team and, believe it or not, you are in a far better position that many (dare I say most) dialysis patients who still come to dialysis without good, early vascular access preparation.
So … tick #1 to you and your team!
I am glad you also have understood, early and before you have started on your dialysis journey, that frequent dialysis is a huge plus - even though it is an awful thought to have to contemplate - as the results from frequent dialysis are clearly far better than the old, out-moded and poor-outcome associated conventional 3 x weekly regimens. I was about to add there ‘of the past’ … but unfortunately conventional dialysis is still very much ‘of the present’ … so, more strength to your arm - and that of your team - for recognizing that and moving to embrace better dialysis from the start.
So … tick #2 to you and your team!
The NxStage machine has revolutionized dialysis in the US. It has put the options of home, of frequency and even of overnight dialysis back on the agenda. It is to be roundly praised for enlightening the darkness in the US and offering better care to so many who otherwise would not have had access to it. As a machine for long, slow, frequent overnight dialysis, it still has some drawbacks - no machine will ever be perfect or fill all gaps equally … but for the purposes you plan - frequent evening therapy (try to get 5-6 evenings x a minimum … a MINIMUM … of 2.5-3 hours/session) at home - it is well-designed and effective and a good choice to take you forward.
So … tick #3 to you and your team!
As for your question re what to do (once you are on dialysis) to optimize your cardiovascular health … this is a huge question. and I have dealt with much of it in several previous discussions where I have dealt with volume and fluids.
Dealt with time and frequency - though you have already come to the right conclusions about this yourself - in my 1st response to the post … “Is 2.5 hrs 3 x week enough?” … and I discussed care of the access in my 1st response to the post … “Preventative access care”.
As for other measures (like phosphate control) … you have already gone a good distance to ensuring this by electing frequent and more dialysis though this, too, has been discussed in previous responses … “What factors determine optimal nocturnal HD?” … to vitamin supplements at … “Fiber and Vitamin Supplements” … and in several responses by several people in … “Nutrition and exercise”.
Re LVH … the best know way to prevent or, if present, reverse LVH on dialysis is with long, frequent dialysis. Imporvement in aneamia management and control has also been shown to minimize LVH though it still needs to be shown that the recent trends to lower Hb levels of 105-115 g/L sustain the previously demonstrated advantages of attaining a Hb level of 120-125 g/L. However, much more important (in my view) is the better control of interdialytic volume over-stretch and intradialytic volume contraction that accrues from frequent and gentler dialysis … as discussed in previous posts about nocturnal dialysis and its major advantages.
However, if you have any specific questions in this area, I’d be happy to try to answer them.
Hope that has answered some of your questions. I know I have suggested going over old posts - but some of these deal precisely with the issues you have raised.
I have previously discussed with Dori if there are ways to ‘extract’ some of the answers hidden in previous posts to make them more accessible … and I think we are working on that!